I have Fibromyalgia - Ask me anything

[clairethewitch70]

I was diagnosed around 2006. Willing to answer questions.

Hi Claire,I too have fibro,diagnosed in 1996.Can you pinpoint what could have triggered it?for example stress or illness? Thankyou

I I know exactly what caused it. Lack of sleep due to a neighbour keeping me awake most of the night every night. This is a well known cause. I have now moved but the damage has been done.

Are you in pain all the time?

My doc says I have fibromyalgia but as the pain isn't everyday I don't know if I'm just getting fobbed off as they don't know what I've got.

I did not know Fibromyalgia could be caused by lack of sleep? I thought it was the brain enterpreting pain in a different way to a non sufferer. Is there anything you do which helps? Do you have gastric problems alongside it?

I also have fibromyalgia, I reckon it was from having 4 DC in less than 6 years, having SPD and sciatica. I have loads of other weird symptoms hate bright lights, strong smells, noise, am always cold, frequent migraines, hypersensitive to touch and fabrics. Weird shooting stabbing random pains. Always tired.

Do you find anything in particular helps you manage the pain?

What is it?

@SinglePringle I hope you don't mind me answering as I'm not the OP but it's basically pain throughout the body. There's not always a specific cause and pain can come and go. It causes exhaustion, brain fog and an increased sensitivity to pain. It can also cause IBS type symptoms and difficulty sleeping (usually due to chronic pain). The pain migrates throughout the body so can be in one area but then move, or it can be pain everywhere.

@poseyCherish thank you. But what is it, how is it caused and why is there such an increase in it? Is it viral? Degenerative? What causes it?

SinglePringle I have it too. It's often brought on by stress, chronic illness, pain or viral conditions. It can be degenerative. I work and have two small kids and am single parent.
I don't know if there's more of it now or if diagnosis has got better. It's very common now but our lives are probably more stressful than ever.
It's a collection of symptoms which when seen together are called fibromyalgia but it could also be something else causing the symptoms.
It affects the nervous system and creates extra adrenaline so makes sleep difficult for many of us, plus heightened anxiety, sensitivity (emotional and physical).
Many of my 'fibro friends' had to give up working along time ago. I can't afford to give up as mortgage etc but I'd give anything to work less or give up. I'm exhausted and constantly in pain.

Have you tried any psychological treatment to see if that cures it?

warcat I have had various counseling and courses at the hospital who all advocate mindfulness as away of counteracting all the nervous system craziness. I have had a few private 'woo' therapies too. Nothing makes it go away. According toned iCal experts theois no cure just pain management which is different for each person.
The best things for me is diet, exercise, adequate rest, 'pacing' my activities and minimal stress. I've worked really hard to achieve these but had two road accidents in two years which really knocked me back, I'm still really suffering as a consequence and si get makes it much worse.

God. Typos everywhere...
*According to medical experts

sweetkitty have you ever had your b12 levels checked? Lots of the symptoms you list there can be caused by b12 deficiency and it's often misdiagnosed initially as CFS, fibromyalgia or MS. It's often accelerated by having babies close together (because they take your b12 stores and you struggle to replenish them) and using gas&air depletes b12 as well.

Has it impacted your marriage/relationship (if applicable) ?

Has it impacted your marriage/relationship (if applicable) ?

DP has fibro. Sorry OP hope you don't mind me jumping in again. It has affected our relationship in the sense that it's difficult for us to even have a cuddle on the sofa / in bed as it hurts DP. Sex sometimes has to be stopped in the middle of due to pain. It also affects what we can do together. For example we both love walking but sometimes that's not possible due to the pain / exhaustion levels. It also means I sometimes do more of the housework or shopping if DP needs to just crash out. We're both really understanding of it though as I too have a chronic pain condition (not the same one) which I think in some ways makes it easier for us both - from an understanding each other perspective - and in other ways makes it harder when we're both having a bad pain or exhaustion flare up.

DP is still managing to work but contemplating getting some crutches / asking for a downstairs office so he can avoid the stairs. It's exhausting for him though working full time but he'd go stir crazy at home so will do anything to stay in full time work. Again it does mean it impacts our relationship though as by the time he finishes work on a Friday he just needs to crash out and recover for a lot of the weekend so sometimes it can feel like there isn't much left for our relationship.

Sorry I just saw there were new questions

@Larasshadow - I have pain most of the time, it fluctuates. I have flares when I can bearly get out of bed, and days where the pain is manageable, so I do too much and suffer another flare. I know I should pace, but it is easier said than done.

@Aroundtheworldandback - yes it can be caused by disruptive sleel patterns. A sleep debt is incurred that it is hard to recover from. This is not the cause for everyone, just thought to be the trigger for mine. Regarding what helps - unfortuanately I could not tolerate Venlafaxine, (made me hypomanic), amitripylline (too sedating) and Lyrica had no effect. The only medication that works for me is opioids, which unusually are not thought to have much effect on Fibro. Gastric issues - I have long term IBS, which seems to have subsided and been replaced with Interstitial Cystitis.

@sweetkitty - I am overly sensitive to noise, just a pan clanging goes right through me. I am always cold - have you had your thyroid checked - I have Hashi's too which was postnatal after the birth of my first DS. Re: frequent migraines, I have a differential diagnosis of hemiplegic migraines/Todd's paralysis/frequent TIA's. I have weird type pains in my arms. My fibro is worse in my arms, my leg issues are put down to spinal issues, but I think that the fibro affects my whole body.

@PoesyCherish - Medication wise, Oxycontin/Oxynorm, and codeine.

I exercise daily, but pace myself, trying not to do to much. My exercise routine may seem meagre to healthy people, but it is all I can manage. I have light dumbells and do ten bicep curls on each arm and ten on each arm raising dumbell behind me. I do a few yoga stretches, in fact before fibro I was very fit. I do 20 steps on a step in the house. I use a Homedics stretch mat most days and it is very good and I highly recommend it. I bought it from QVC as it was the cheapest offer at the time.
I have a steam shower. Wet heat is believed to be beneficial for fibro, and twice a week I bath in my hydrotherapy bath.
If you can get access to Hydrotherapy sessions at your local hospital - go for it. It really helps.

@singlepringle - basically it is a long term pain condition that affects most of the body. It can cause anything from cognitive issues (fibrofog) to crippling fatigue to increased sensitivity to noises and smells. Everyone who is affected has a different pattern. Can range from being able to work with a bit of pain, through to being bedbound/wheelchair dependent. There are many causes, mine was due to an alteration in my sleep pattern. Some causes are post viral, stress, environmental toxins, and there are several associated conditions such as thyroid issues.

@warcat - I have been under the pain team for many years, and have had mental health input. Unfortunately because of other existing mental health issues, CBT has not been effective. My Consultant is trying to get me onto an inpatient pain management programme but we are having difficulty securing the funding. If I am successful they will tailor make a programme for me including psychological input and physical therapy.

@PetuliaBlavatsky - I have regular B12 checks, as I have an autoimmune illness, we have PA in the family, and I am vegetarian almost vegan. Normal everytime. My ironstores are borderline though, so I take a liquid iron supplement.

@SuperSuperSuper - yes very much. We were a very active couple, went walking most weekends. No we visit the same places and DH has to push me around in a wheelchair. I had just started a successful business, which I had to close down as the demands on me were too much. I now work from home for DH's business. Some days he only has to touch me and it hurts. He has found it hard to adjust to how I am now. My children have only known the ill me.

@PoesyCherish - for you . I use crutches when I leave the house, and walk with a trolley type thing around the house. Stairs are exhausting, I was lucky, we moved to a bungalow, just before I was diagnosed.

Do you work? And/or have you struggled to get sick notes during flares?

Just curious because I know drs aren't always great with fibro

@Bumblebee39 - I work full time, but from home and as it is my DH's company, it is very flexible. If I am ill, I don't work andcatch up the next day. I don't take any official time off sick. However, there is no way I could hold down a job out of the house. I would need 2-3 sick days a week due to IC and fibrofog amongst other things. I have a standing appointment with my GP every three weeks (he makes the appt for the next time when I am with him) and he gives me a 45min appointment. He is extremely supportive and keeps an eye on my multiple MH and physical health issues. He says he would give me time off sick if I need it.

I have it too but mine was triggered by a degenerative autoimmune disease. Fibro isn't degenerative but it can make you feel like utter crap when it's bad.

I'm glad you have a supportive GP @clairethewitch70

Do you drive? If not is it because of the medication or the fibro itself?

Do you double check your own blood test results? Tsh under 2, t4 and t3 ok?, b12 over 500, vit d levels okay? Have you ever tried natural dessicated thyroxine and did it help?